@suppiskey2surv @sally4910
Let’s see if I can post some information in the comments that might be helpful to both of you.
MGUS it’s not cancer and hopefully it will never be cancer for any of us. It’s considered a precursor condition for multiple myeloma, but the rate of progression from MGUS to multiple myeloma is very low/slow.
There’s no easy answer to how much risk you experience as an MGUS patient because there are so many variables. Pre-existing conditions make us more vulnerable than if we are otherwise 100% healthy.
I’m one of those people who wants to take the bull by the horns and immediately begin to whack away at whatever it is that’s threatening me. I’d prefer that I didn’t have the M protein at all. Treatment is reserved, however, for those people who are the most threatened by multiple myeloma. Even those who have smoldering multiple myeloma. As I understand it, it’s the same reason they don’t want you to get antibiotics for conditions that aren’t very serious because you’ll build up a tolerance for the antibiotics.
So although it may make you anxious not to be getting treatment, it actually means that your hematologist/oncologist considers you to be at low risk.
I honestly don’t know, nor do I remember reading anything in the literature about hives in particular as a symptom of MGUS. Some people do experience peripheral neuropathy. There are some medications that may help with that. Some of our members have had some success with curcumin/turmeric and others with diet, specifically the Mediterranean diet. You might search some of these discussions in Connect and see if you find them helpful.
You are absolutely correct about getting physicians to pay attention to you. You need to make sure that you are heard and that you have physicians who are willing to hear you. Finding the right physician is a really important part of your medical journey. I also find that I have to take some responsibility in making sure that this happens. I write down all my questions before my appointments and I pull out my notebook and systematically cross them off after we have discussed them to my satisfaction. That tells my physician that I’m really serious about him hearing me, but also reminds me that his time is valuable and I have to be organized in order to have a productive appointment.
There are many members of Connect who have lived decades with MGUS that has not advanced to Multiple Myeloma. My own “numbers” advanced a bit when I had major surgery, but then settled back down as my body healed. They are now back to where they were when I was first diagnosed, over 4 years ago.
Thank you both for your posts. We all learn from one another. Let me know how it’s going for you, particularly if your dots get connected as bout MGUS and hives.
Patty